Originally published on The Georgia Straight.
When John De Villa experienced his first grand mal seizure at age 44, doctors couldn’t tell him what had caused it.
The otherwise healthy software technician wasn’t born with epilepsy, didn’t drink or smoke, and hadn’t taken as much as a Tylenol in decades.
During the course of the next eight months, he would suffer a total of 12 grand mal seizures. Doctors would later tell him the effects on his brain were equivalent to what one would experience after a series of back-to-back concussions.
“The way to describe 2015? Hell,” De Villa tells the Straight one afternoon in his Burnaby apartment.
Seated next to his wife, Maxine, he explains the severity of his seizures. “At seven minutes you’re risking death, because there’s no oxygen to the brain,” De Villa says. “I was seizing for 15 minutes.”
Even doctors at a Burnaby emergency room didn’t believe him about the length of his seizure until Maxine showed them a video she had recorded on her phone.
Without undergoing a single test, De Villa says, he was assured by doctors that his best course of action would be to start taking a regular dose of prescription drugs.
Not satisfied with that assessment, De Villa searched for a second opinion, then another. He says each doctor had the same solution: “All they wanted to do was shove pills down my throat.”
Maxine says the seizures rendered her husband practically immobile, while doctors told them his brain function had been reduced to 20 percent.
“The blinds were down all day because of the light,” she recalls. De Villa’s condition made his eyes very sensitive. “He was crawling on the floor. He couldn’t pour a glass of water. He could barely sleep.”
“I couldn’t even have a face-to-face conversation, much less formulate or articulate a sentence,” De Villa adds. “We finally said, ‘Either we go and find a really good doctor or we start these prescriptions.’ ”
The couple chose to spend thousands of dollars at a private clinic in Vancouver, where De Villa underwent rounds of nutritional-supplement treatment and costly neurofeedback training, a process that uses electrodes to train the brain to control abnormal activity. The two eventually took out a second mortgage to cover the costs.
“I had every test known to man,” De Villa says. “Everything came back clean.”
His condition improved but the seizures continued so regularly that on one occasion, De Villa recalls, he was kicked out of a local emergency room because doctors said they couldn’t help him. Another time, after a particularly long seizure, Maxine called 911, only to be told that his situation was “not life-threatening” enough for an ambulance.
By now, De Villa had begun scouring the Internet for alternative treatments. One day, the letters “CBD” popped up in a search. He learned that the three-letter acronym was a powerful compound in cannabis, called cannabidiol.
“I brought it up with my neurologist and he said at this point there was no harm in trying,” De Villa remembers. He went home with an authorization for medical marijuana.
He placed an order with one of Health Canada’s licensed producers, but after failing to feel any relief from the products and suffering yet another seizure, his neurologist said he had no choice but to put De Villa on a high dose of benzodiazepines, a class of tranquilizer drugs that have anticonvulsant properties—an option, though, that De Villa feared would make him reliant on the drug.
“I was a complete zombie, on top of already being a zombie, so it made things much worse for me,” he says of the pill’s adverse side effects.
Then De Villa realized that Health Canada’s medical marijuana wasn’t his only option.
“I thought, ‘Why would I order from a place that’s not in B.C. when I can just walk a few blocks to a dispensary?’ ”
De Villa visited 15 different shops before he found one where budtenders possessed the knowledge he was looking for.
With guidance from staff at the Village and local cannabis educator Adolfo Gonzalez, De Villa decided the only way to accurately determine which products worked best for him would be to embrace the role of a human guinea pig. After two months, he says, he started to feel a change.
“When I finally figured out how to use cannabis as medicine, I started going back to the gym; I was cleaning the house again and I was behaving like a normal person,” De Villa recalls.
“I decided, ‘This is it.’ This is the solution to my health problems.”
Today, the 46-year-old has been seizure-free for more than one year and is an active member of Vancouver’s cannabis community, working as a consultant alongside Gonzalez. He is also about to launch B.C. Wellness Centre, an online resource created for patients and by patients.
As De Villa’s primary caregiver, Maxine now microdoses cannabis to help with sleep and anxiety. When their vet diagnosed their dog, Prince, with pancreatitis, De Villa says, he used a CBD tincture to clear up symptoms. He did the same when their second dog, Kobe, had kidney stones. (Their vet now uses it as part of her practice, he says.)
As of September, De Villa is also 100-percent prescription-free. He says cannabis is the only reason he was able to survive the painful withdrawal from the benzodiazepine drug he was prescribed.
But today, De Villa says the fear that he might again face the “hell” he experienced back in 2015 is all too real. As Canada’s legalization deadline approaches, he’s afraid that he’ll no longer have access to the products that helped him get his life back.
The Liberal promise to eliminate the black market means it is almost certain that Vancouver’s licensed dispensaries will be required to sell cannabis from Health Canada’s approved producers. This means the products used by De Villa and other patients who opt to use dispensaries instead of licensed producers will no longer be (legally) accessible.
De Villa says he has nothing against licensed producers, and he has tried product from two different firms with no relief. He’s currently waiting for his first delivery from a third.
“I want to give them a chance,” he says, “but it’s taken over three weeks just to process my application. That’s crucial for someone living with a life-threatening illness.”
Affordability, he says, also plays a role: where a tincture at a dispensary might cost $40, a similar product at a licensed producer is three to four times the price.
Lindsey Gorman, a friend and business associate of De Villa’s at B.C. Wellness Centre, also suffers from a seizure condition and has found relief with cannabis. She shares De Villa’s fear. These days, Gorman might have a seizure once or twice a year, but at the height of her condition, she was having five to six seizures a week—even when she was taking a prescription.
“During that time, I doubled my body weight and I lost my hair,” she recalls. “I was barely a person.”
Because Gorman’s condition requires high doses of THC (tetrahydrocannabinol), she prefers to use suppositories, which don’t cause the psychoactivity associated with THC. Unfortunately, not a single licensed producer offers cannabis in this form.
“Until they can offer the full range of products that I can find in a dispensary, I don’t want to have to go through that experimentation again,” she says.
“If anyone knows what it’s like to try and switch up a medication, there’s a lot of anxiety associated with finding what works best.”
Lawyer Robert Laurie has represented clients in the cannabis industry for five years and says that if patients like De Villa and Gorman no longer have access to their desired medication, they could have an opportunity for legal recourse.
“Dispensaries and companies do have standing to bring charter challenges forward, especially if they’re shut down,” Laurie says. “The entity can bring the action, and its members can also bring the action on behalf of the entity.”
He says dispensaries are currently providing a service that governments at all levels are unable to.
“Dispensaries are at the heart of cannabis access,” Laurie says, quoting a 2013 Supreme Court of Canada ruling by Justice Michael Phelan, “and the government is acting contrary to that.”
For De Villa, becoming a human guinea pig again isn’t an option.
“As I’ve learned, if you find something that works for you, you stick with it,” he says.
“If those options are taken away from me, my health will deteriorate, and if that happens I will rally against the government’s policy, because it is getting in the way of my recovery and my health.”